Movement, Knowledge, Emotion: Gay Activism and HIV/AIDS in Australia to Test Or Not to Test?: HIV Antibody Testing
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3. Public Health and AIDS Activism A lot of the work of the AIDS movement in the 1980s was about the way in which HIV/AIDS and the people most affected by it were defined and the steps that needed to be taken to address AIDS. This work was done in conjunction with a range of other individuals and organisations with an interest in HIV/AIDS— most notably from within the Government and the medical profession. Kevin White and Evan Willis argue that there were three core groups competing to ‘enforce their definition of the (HIV/AIDS) situation’.1 The first of these groups was the ‘inner circle’ of doctors, scientists and medical researchers working in the HIV/AIDS sector. White and Willis describe the second as the ‘dissenting enclave’—those non-governmental groups such as the AIDS movement who worked in parallel with the inner circle, but also challenged their scientific autonomy. The third group is the ‘exoteric’ body of lay-people surrounding both the inner circle and the dissenting enclave. This ‘exoteric body’ tends to support the knowledge and values of the inner circle, and seeks to minimise the impact of the dissenting enclave. In the case of HIV/AIDS, the exoteric body was usually people with an anti-gay, pro–nuclear-family agenda—often religious organisations or conservative public commentators. Borrowing from White and Willis, the following chapters explore the relationship between these three groups in the production of knowledge about HIV/AIDS, and in defining Australia’s social and public health response to HIV/AIDS. I focus predominantly on the relationship between the medical profession (the inner circle) and the AIDS movement (the dissenting enclave), although those forming the ‘exoteric body’ (such as conservative churches and various journalists) also influenced the direction of discussion about HIV/AIDS at various times. The way in which HIV/AIDS came to be perceived and dealt with in Australia was largely a product of both the contest and the collaboration that occurred between these different social groups and the work of individuals who sat within both groups, such as gay men who were doctors. As AIDS activists had attained a more credible and legitimised position within the Federal Government’s response to HIV/AIDS, there was pressure on the ‘inner circle’ to negotiate with them. The tension this created was evident in one of the first major debates in Australia about public health responses to AIDS: the issue of HIV antibody testing. 1 White, Kevin and Willis, Evan 1992, ‘The Languages of AIDS’, New Zealand Sociology, 7(2), pp. 127–49, at p. 127. 83 Movement, Knowledge, Emotion: Gay activism and HIV/AIDS in Australia To Test or Not to Test?: HIV antibody testing The first HIV antibody test—the ELISA2 test—began to be used in Australia in April 1985. As this was some years before any effective antiviral treatments were available,3 the arrival of the ELISA test meant that people could be diagnosed as HIV positive but were not treated for the virus. For individuals who tested positive, doctors could do little besides advising on healthy lifestyle and nutrition choices and providing ongoing surveillance of related illnesses. Doctors could try to manage the physical symptoms of AIDS-related infections when they appeared, but an early diagnosis of HIV was not likely to change an individual’s long-term prognosis. Despite this, medical authorities and many individual doctors strongly advocated the HIV test, with the Albion Street Clinic in Sydney (a prominent HIV/AIDS and sexual health clinic) releasing a pamphlet that proclaimed ‘A Simple Blood Test Could Save Your Life’.4 From a medical research perspective, the ELISA test created the capacity for wide-scale monitoring of the virus. There was also a general view held by many medical professionals that knowing one’s HIV status was a good thing in terms of self- care and accessing appropriate clinical services as early as possible. For many people in the gay community, however, the reasons not to submit to an HIV test far outweighed the reasons for testing. As well as unease about the stress and emotional trauma that would likely be associated with a positive diagnosis, people were concerned about the discrimination they might face if they were known to have HIV. Studies conducted by the Queensland and WA AIDS councils at the time also showed that gay men were reluctant to take an HIV test because they did not trust government guarantees about the confidentiality of test results. Unsurprisingly, given that homosexuality was still on the criminal code in those States, gay men also feared persecution by authorities if they did test positive.5 The following extract from the memoirs of an Australian man, David Menadue, describes well the tension brought about by an HIV test: 2 ELISA is an abbreviation for ‘enzyme-linked immunosorbent assay’. 3 The first breed of HIV medications—a drug known as Zidovudine (or more commonly AZT)—began to be trialled in the United States in 1986 but did not become widely available in Australia until the 1990s. Sendziuk, Paul 2003, Learning to Trust: Australian Responses to AIDS, UNSW Press, Sydney. 4 Ibid. 5 Bull, Melissa, Pinto, Susan and Wilson, Paul 1991, ‘Homosexual Law Reform in Australia’, Australian Institute of Criminology Trends and Issues in Crime and Criminal Justice, 29, <http://aic.gov.au> 84 3 . Public Health and AIDS Activism My doctor, David Bradford,6 pronounced, ‘David, I’m sorry to have to tell you this, but your test is positive.’ So much for my friends who claimed there was no way this virus had reached Melbourne yet. So much for my general practitioner who had said several weeks earlier that the swollen glands in my armpits were probably the result of a transient infection, and that I didn’t need a test for this new virus… The test had only been available in Australia for a few months, and hardly any of my friends had chosen to be tested yet. Some were afraid to find out the result. And others couldn’t see the point. As one friend put it, ‘What’s the value of knowing you’re positive? There are no treatments, it’s likely to cause you added stress, and who knows, you might suffer discrimination if people find out your status’… A counsellor at the clinic asked who I wanted to tell the news. I was about to reply that I was sure all my gay friends would support me, when he advised caution. ‘Even people in the gay community don’t understand much about this virus yet. Some people may harbour real fears about catching it from you, whether that’s realistic or not. Think carefully about who you tell and how you handle it.’ It was finally starting to dawn on me. This was not news that would necessarily invite acceptance, understanding or compassion. This was not necessarily the same as revealing my sexuality. Even the gay community, my support base with whom I had developed my sexual identity over the past ten years, might not embrace this news. This was about disease, infection and death. There was no telling how people would react.7 The issue of whether or not to encourage gay men to undertake testing became a major debate among AIDS activists—and between activists, governments and researchers. Some felt that the importance to medical research was such that the movement should advocate testing even if the health benefits for individuals were negligible. Lex Watson, President of ACON at the time, wrote in Outrage magazine: 6 David Bradford was a gay man and physician. He was involved in the political and medical side of the HIV/ AIDS response. Phil Carswell describes Bradford as ‘a true hero, living legend’ for his role in assisting people with HIV/AIDS. Phil Carswell, Personal communication, 25 October 2006, Melbourne. 7 Extract from Menadue, David 2003, Positive, Allen & Unwin, Sydney. 85 Movement, Knowledge, Emotion: Gay activism and HIV/AIDS in Australia There is little dispute that more needs to be known about the natural history of the infection, and that is what is gained through testing. As a community it is clearly in our interests to participate in such research. A strong case would need to be made for non-cooperation in such work and, in my view, subject to satisfactory confidentiality procedures existing, such a case has not been made.8 In spite of this, a sense of unease about the security of test results underpinned all debate. It was felt that the risks posed to gay men’s social security were greater than the potential research benefits of wide-scale testing. In the same edition of Outrage, Phil Carswell, former President of the VAC, wrote: At the moment, to take the antibody test is to agree to put your name and address on a list of gay men, a list over whose future use or misuse neither you nor your doctor have ultimate control, and to risk being publicly identified as an ‘AIDS carrier’, which is how the media invariably (and falsely) identify Ab+9 people. The consequences of being so identified could be unpleasant. Already in the US gay men are being denied insurance, employment and housing on the grounds of an Ab+ finding.10 Carswell went on to conclude that ‘[t]he fact is that this test is simply not a useful diagnostic tool. Its only real uses are for sampling work, to measure the progression of seropositivity in the at-risk groups, and for screening blood products.’ Both Carswell and the VAC went on to review their position on testing when antiviral treatments became available and it was demonstrated that early diagnosis could improve health outcomes for people testing positive to HIV.